Cancer Survivors Network - Comments for "Rituxan only"http://csn.cancer.org/node/188084
Comments for "Rituxan only"en-csnRituxhttp://csn.cancer.org/comment/1405838#comment-1405838
<a id="comment-1405838"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/1405428#comment-1405428">Please help, info needed</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Jillian,</p>
<p>Several of your questions are addressed above on this thread, which is about three years old. You may want to start at the top and go through all of the posts, if you did not already. While I never took Rituxan <strong>by itself</strong>, I will submit what I know, and perhaps get the discussion going again.</p>
<p>What I did take was a combo known as R-ABVD, the standard first-line treatment for most HLs. My first bag on infusion day was always the Rituxan. If she receives full-dose, it is a long bag, and most people say their's runs about 3 hours. Mine averaged about that length also. On her first infusion, they will start the drip very slowly, watching for allergic reactions, which are fairly <strong>uncommon</strong>. Benadryl is usually given first, as a precaution against such possible allergic effects, and this may cause her to doze off asleep for a while (it always put me to sleep). If she handles the first infusion ok, most clinics will speed up subsequent infusions, but it will probably always take at least 2.5 hours, if not more. A pretty common effect <strong>during</strong> infusion itself is feeling <strong>chilled</strong>, and it caused me to need a blanket.</p>
<p>Probably the most common side-effect of Rituxan is<strong> muscle cramps</strong> and muscle/bone pain. It commonly feels about like <strong>the flu</strong>. Since I had two other drugs that also cause flu-like symptoms, I cannot say exactly how much of my pain was from the Rituxan verses other drugs, but I felt like I had the flu for six months, the whole time I was on chemo. I took Loritab the whole six months -- nothing less would touch it, but I was in pretty rough shape overall. In other words, the pain can potentially be substantial. Fortunately, some people do not report this pain. Another common effect is fatigue, which is common to almost every chemotherapy drug anyway. I slept about 17 hours per day for the half-year period of treatment also, but again, I was very, very sick. I could not walk more than about 50 feet, maximum (I was 53 at the time).</p>
<p>Rituxan, as you were told, is way milder than most conventional chemos, and it does not cause hair loss. It also does not routinely cause neuropathy (numbness in the hands and feet). Even nausea is uncommon with it. Rituxan is a routine drug for inflammatory arthritis patients, although the arthritis dose is substantially lower than the dose used for chemo. I have a friend (no cancer) who has been taking the drug for her arthritis for several years now.</p>
<p>The links below should be helpful. </p>
<p>Regarding Rituxan in general:</p>
<p><a href="http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx">http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx</a></p>
<p>Reegarding "Flulike-Syndrome" :</p>
<p> <a href="http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx">http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx</a></p>
<p> </p>
<p>Bless the both of you,</p>
<p>max</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Sun, 22 Sep 2013 14:12:46 +0000Max Former Hodgkins Stage 3comment 1405838 at http://csn.cancer.orgJillianhttp://csn.cancer.org/comment/1405829#comment-1405829
<a id="comment-1405829"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/1405428#comment-1405428">Please help, info needed</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Hey Jillian, I am no expert by any means, brand new here myself but I just took my fourth rituxan (3 with chemo , one without.) and I think rituxan alone is fairly safe with almost no side effects and does the job for awhile at least. I am not sure about her age and rituxan if that makes any difference. Curious to know. Good luck, Wish your Grandmother the best !</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Sat, 21 Sep 2013 03:28:51 +0000Jace974comment 1405829 at http://csn.cancer.orgNight Sweatshttp://csn.cancer.org/comment/1405786#comment-1405786
<a id="comment-1405786"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/801289#comment-801289">Thanks</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Night sweats are considered B symptoms and are unusual for indolent forms. However I have indolent FNHL and occasionally get night sweats. The problem with a "small" nightsweat is everybody has them and there can be many causes. Sometimes you are just hot or stressed. Get it checked out but don't worry prematurely. This is the new normal.</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Sat, 21 Sep 2013 00:18:06 +0000GKHcomment 1405786 at http://csn.cancer.orgPlease help, info neededhttp://csn.cancer.org/comment/1405428#comment-1405428
<a id="comment-1405428"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/825269#comment-825269">Thanks</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Hello,My 85 year old grandmother was recently diagnosed with Diffuse Large B Cell Lymphoma. She is elderly and weak so chemo is out of the question. We were given the option of Rituxan only treatment. Although the side effects are very different then with chemo and seemingly less severe we are still very concerned about them. I was hoping for some feedback from anyone who has had Retuxan only treatment about the side effects. What you experienced, how bad they were and how the risks were presented to you when you were given this option. We are well aware that this will not be a full cure for her but the risks and side effects have been explained to us by multiple doctors who all make them sound so different I would like some information from People who have actually been through it before making a final decision. Thank you so much, Jillian</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Thu, 19 Sep 2013 18:25:44 +0000Jilliankaycomment 1405428 at http://csn.cancer.orgHairhttp://csn.cancer.org/comment/876250#comment-876250
<a id="comment-876250"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/876061#comment-876061">CVP, RITUXAN</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>The first time when I did the CVP+R I did lose my hair, from the chemo only. I have never been sick or lost hair from rituxan only. I get kind of tired for a day or so after but that's about the only thing.</p>
<p>This last time doing only rituxan once a week for 4 weeks and every other month maint, mine is also almost gone. Pretty much gone in the armpit and spine area and reduced intensity on the spot in the lung. My onc tells me anything under a 2 suv on the pet scans they just watch and I am at 1.7 so they don't worry about it too much. I did ask my onc when he'd o another scan, and he said when I tell him I don't feel so good because I know my body and tell him when it happens. I was kind of disappointed when it wasn't completely gone though I admit.</p>
<p>I think there will always be "some" level of disease that stays active, at least that's what my brain tells me....I haven't asked my doctor cause I think I'm afraid to :)<br />
With time I am getting more comfortable, but I have bad days too. I hope you are doing well and everything is behaving!</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Wed, 04 Aug 2010 23:12:37 +0000dixiegirlcomment 876250 at http://csn.cancer.orgCVP, RITUXANhttp://csn.cancer.org/comment/876061#comment-876061
<a id="comment-876061"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/803901#comment-803901">Rituxan Only</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>hello dixiegirl, i have a question about your cvp and rituxan treatment you first had. i also had the same treatment for 7 rounds ending last feb. the question is, did you loose your hair and get sick from the ttreatment? i did not. the only thing i felt was tired and ached alot in my legs. i will start 4 rituxan treatments the end of this month for maintance. my follicular lymphoma is in my abdomen and is almost gone. the word "almost" concerns me. was yours completely gone? good luck to you, take care. bk1950</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Wed, 04 Aug 2010 17:22:55 +0000bk1950comment 876061 at http://csn.cancer.orgIt's a whole new worldhttp://csn.cancer.org/comment/866935#comment-866935
<a id="comment-866935"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/866726#comment-866726">Rituxan only</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>I'm sorry you are on this road with the rest of us, but Thank God you are here......stage 1 woo hoo!! I also began this struggle at stage 1, however I was having b symptoms and started with chemo and rituxan.</p>
<p>I was TERRIFIED, no other term comes close to the emotions going through my body and mind. Sleep was fitful at best and sometimes it would get to complete exhaustion before I got any rest. Benedryl at night helps knock you out....you HAVE to rest sometimes. If it gets to be too much, talk to your onc about anxiety meds....there is NO SHAME in saying I need help with this.</p>
<p>All I can say is I spent a huge amount of time here both in discussion groups and chat rooms talking with other survivors. It gets easier with time although the stress of having cancer never completely goes away. Should it come down to chemo time, it's ok and it truly IS doable. It's not fun, but you can do this.</p>
<p>I wish you the best of luck and hope your watch and wait lasts a really long time :)</p>
<p>Take care,</p>
<p>Beth</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Mon, 19 Jul 2010 23:26:48 +0000dixiegirlcomment 866935 at http://csn.cancer.orgRituxan onlyhttp://csn.cancer.org/comment/866726#comment-866726
<a id="comment-866726"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/864974#comment-864974">Rituxan only</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>I was diagnosed 11/09 with Non-Hodgkins Lymphoma, stage 1. My doctor had me do four treatments of Rituxan over one month. It seems to have caused the tumor to shrink slightly and has not gotten any bigger at this time. We are in a watch and wait mode now, I go back for another CTscan in four months. Chemo scares me so if he told me I could take Rituxan indefinitely, I would. </p>
<p>How do you all cope with the fear and the unknown? Some nights I don't sleep at all. I need some hints.<br />
Thanks</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Mon, 19 Jul 2010 17:27:21 +0000niborskramcomment 866726 at http://csn.cancer.orgConfusinghttp://csn.cancer.org/comment/865192#comment-865192
<a id="comment-865192"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/864974#comment-864974">Rituxan only</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>Hi Today,<br />
I haven't had my scan yet so I don't know if I would do it again. I'm scheduled for Aug, but I'm sure you will need to decide before that. I do not have NHL in my marrow, but it has spread to my hip bone(makes me stage 4, grade 2). What I find to be bizzare is the difference of opinions on the PET. How do they know if it has become aggressive or if the treatment has worked if they don't have anything to look at or compare? I had a CAT scan too, but only the PET picked up the spot on my hip. I've never had any symptoms except the swollen node on my collar bone and my blood work has always come back normal even now. It's so conflicting and confusing I just don't get it. Maybe like everything else it's on a case by case basis?? I'm sorry I don't think I helped you with your decision, but I wish you the best of luck with it! Cat</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Fri, 16 Jul 2010 18:40:38 +0000catwink22comment 865192 at http://csn.cancer.orgRituxan onlyhttp://csn.cancer.org/comment/864974#comment-864974
<a id="comment-864974"></a>
<p><em>In reply to <a href="http://csn.cancer.org/comment/821179#comment-821179">Rituxan only</a></em></p>
<div class="field field-name-comment-body field-type-text-long field-label-hidden"><div class="field-items"><div class="field-item even"><p>I have a question for all of you that have had Rituxan only. If you were offered that option again (knowing what you know now) would you go with it? I know that some have had success with it and others have had reoccurances rather quickly. I have two opinions from two fine insitutions and one option is Rituxan only. The other institution said that if there is bone marrow involvement with ANY indolent lymphoma that you then need chemo and not just rituxan.( My NHL is in my bone marrow)</p>
<p>Also, a previous post talked about PET scans being more for the patient and that is exactly what my two doctors have said. Indolent lymphoma may not show on a PET scan but may show on CAT or MRI. They diagnosed me finally with a lymph node excision and blood work results.( as well as symptoms)I dont expect a PET scan to be used again unless they suspect tht the cancer has turned agressive which makes it visable on the PET once its active.(per my docs)</p>
<p>Thanks everyone and my best to you all!</p></div></div></div><ul class="links inline"><li class="comment_forbidden first last"><span><a href="/user/login?destination=node/188084%23comment-form">Log in</a> or <a href="/user/register?destination=node/188084%23comment-form">register</a> to post comments</span></li>
</ul>Fri, 16 Jul 2010 05:53:38 +0000onlytodaycomment 864974 at http://csn.cancer.org